Paul Scotti (@pscotti)
Activity by Paul Scotti
For most organ transplant recipients, receiving the “gift of life” is a one-time experience. But for Nellie Betancourt, battling the hepatitis C virus that had been in hiding in her body for years required another “second chance at life,” thanks to a second generous donor and a new generation of anti-viral drugs.
Betancourt, a 56-year-old mother of two and grandmother of seven from Puerto Rico, was first diagnosed with elevated liver enzymes during a routine exam in 1995. Further testing revealed a positive result for the hepatitis C virus, which resulted in several rounds of standard anti-viral drug treatments over the next several years, none of which were successful in effectively managing her disease. This began a 20-year battle with hepatitis C that was to eventually include two liver transplants performed at Mayo Clinic’s Florida campus.
“By 2002, I was told that my liver enzymes were rapidly increasing, and that I’d eventually need a liver transplant or face liver failure,” says Betancourt. “I was only 42 years old at the time.” [...]
When 69-year-old allergist and rheumatologist Mike Mass. M.D., was diagnosed with multiple myeloma in August 2013, he quickly realized that being the patient and trusting the advice of a fellow physician with expertise in a disease outside of his realm of expertise would be a challenge.
“I’ve always advocated open communications with my patients about their treatment options, as it’s important for the physician and patient to be on the same page,” says Dr. Mass. “Although I’m not a cancer expert, I know enough about the disease to ask lots of questions of my own oncologist on the best treatment options available. It was hard balancing the need to express my opinions without impeding my physician’s own expert medical judgment.”
Dr. Mass was in private practice in the Jacksonville, Florida, area for more than 30 years before going part-time and joining an allergy group practice in 2008. That’s where he worked until his diagnosis in 2013, when he finally decided to retire from practicing medicine. He had known he was at a greater risk for contracting multiple myeloma for many years because of a condition called monoclonal gammopathy of undetermined significance , or MGUS, which he was diagnosed with decades ago. MGUS is a condition in which an abnormal protein (M protein) is found in the blood. That increases the risk of developing multiple myeloma at some point in the patient’s life. Dr. Mass had no symptoms but found out several years ago after some blood work that his M protein levels were at the point where he now had “smoldering myeloma,” an early phase of this cancer condition. [...]
When a doctor suddenly becomes the patient with a life-threatening illness, Mayo Clinic’s commitment to high-quality medical care that puts the needs of the patient first takes on fresh perspective, especially as it relates to the principle of compassionate care, which is a hallmark of Mayo Clinic.
Such was the case when Joseph J. Tepas III, M.D., a 68-year-old pediatric surgeon in Jacksonville, Florida, learned that the wheezing and shortness of breath he was experiencing turned out to be idiopathic pulmonary fibrosis, a potentially life-threatening disease that occurs from unexplained scarring of the lung tissue.
In addition to doing pediatric surgery, Dr. Tepas is a practicing trauma surgeon and surgical intensivist. He is the medical director of the region’s only pediatric trauma unit, and, as a retired captain in the Navy Reserve, appreciates the critical importance of maintaining a personal commitment to health and fitness. Dr. Tepas had always lived a healthy lifestyle and, other than some occasional allergy symptoms, never had any significant health issues. But lying dormant in his otherwise healthy body was a disease that was quietly scarring and shutting his lungs down.
Some people who overcome a life-threatening illness feel motivated to give something back to those who helped make their recovery possible. Charlie Willwerth, a 61-year-old leukemia survivor and bone marrow transplant recipient from St. Augustine, Florida, is taking steps to help bring life-saving stems cells to others in need of a bone marrow transplant.
Two years out from his bone marrow transplant, and with his leukemia in remission, Charlie recently completed courier training with Be The Match, the world’s largest bone marrow registry, to become a volunteer stem cell courier. His new “job” -- transporting life-saving stem cells from a donor’s location to a matching recipient -- can take him anywhere in the world.
“This is the most direct way I can help others who have helped me get a second chance at life,” says Charlie. “If it wasn’t for my donor, I might not be here today to have the opportunity to help others with needs similar to mine.” [...]
Being diagnosed with multiple myeloma, a serious blood cancer, is difficult enough to accept. But being told that you also have a rare hematologic condition called amyloidosis — a disorder that could prevent you from receiving the bone marrow transplant necessary to combat your myeloma — could put anyone’s strength to the test.
Such was the case for 67-year-old Kendall Schwindt of Sun City, Florida, a retiree who spent 26 years with Walmart and who has remained active playing golf and riding his motorcycle. After experiencing a sudden illness in March 2013 while visiting his son, Schwindt knew something wasn’t right. After visiting his family doctor, he was told he had a very high creatinine level in his blood and was sent to a local nephrologist for a kidney biopsy.
His diagnosis — multiple myeloma, a cancer of the plasma cells, a type of white blood cell present in bone marrow. Plasma cells normally make proteins called antibodies to help the body fight infections. But that wasn’t only devastating news Schwindt would receive. [...]
Such was the case of 67-year-old Donald Glynn of Jacksonville, Fla., an avid runner who has participated in countless marathons, half marathons and 5K races over the last 30 years. He also watched his diet, weight and blood pressure, and did most of the things you’d expect of someone who led a healthy lifestyle. But Donald, who worked as a surgical assistant at Mayo Clinic in both Rochester and Florida before his retirement, neglected one thing — regular checkups. Given his family’s history of heart disease (his mother, grandmother and grandfather all had it), that turned out to be a serious mistake.
After experiencing an irregular heart rate earlier this year, Donald was shocked to learn that his arteries were severely blocked and that he’d need a heart transplant. His condition was serious enough that while waiting for a new heart, he’d need to have a left ventricular assist device (LVAD) implanted to help his damaged heart function properly.
“Needless to say, given my lifestyle and being a runner for so many years, I was stunned to hear about the condition of my heart,” he says. “I thought I was doing everything right, but given my family history, it apparently wasn’t enough.” [...]
To 22-year-old double lung transplant recipient Curtis Higgons, being dubbed the “miracle patient” by his physicians may seem somewhat overstated. But when you consider the medical challenges his doctors had to contend with in preparing him for a life-saving double lung transplant, his moniker may be well deserved.
Curtis was born with cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States alone. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and can lead to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. As the diseases progresses, lung transplantation often becomes a last treatment option.
“Although I was diagnosed with CF at six months old, it only had minor effects on my breathing until I reached my early high school years,” says Curtis. “I was a varsity athlete in bowling and golf, but during my sophomore year of high school things began to progress, and I ended up in the hospital three times.” [...]
Melanoma is the deadliest form of skin cancer. And for those patients whose disease has spread beyond its origination site, most treatment options have offered only modest success in controlling the disease. So when James Donaghy of Huntersville, North Carolina, entered a clinical trial at Mayo Clinic in Florida testing the effectiveness of an experimental immunotherapy drug called MK-3475, he figured he had nothing to lose after several other chemotherapy treatment options failed to control his melanoma.
The 67-year old, Brooklyn-born Donaghy had his first experience with melanoma in 1994, when he found a mole on his back. As a phone company lineman for 36 years who worked outdoors on a daily basis, he figured his prolonged exposure to the sun may have put him at high risk for skin cancer. The mole was eventually diagnosed as melanoma and removed by a plastic surgeon. With regular monitoring by his doctor, all was well for many years, until he found another mole in 2011, this time on his neck, which turned out to be a recurrence of his melanoma.
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